World Health Organisation: Standard Practice for Vulva Exams when Ladies have their first Smear/Pap test!

If I had been educated on the signs and symptoms of Vulval Cancer I would never have had to have the extensive and disfiguring surgery I had on April 24th 2001. Please tell the Doctors we ALL need to know about and be checked for Vulva Cancer! We need to be shown how to check ourselves! We need to be Eduated and Aware of Vulva Cancer! Please tell the Doctors WE have the right to be Educated and Aware of Vulva Cancer and checked for it. There needs to be Screening in place for Vulval Cancer, we are not living in the Victorian age this is 2013 and no cancer should have a stigma like Vulva Cancer has! Ladies have a right to be warned about Vulval Cancer which if picked up early has an excellent prognosis and will also prevent Ladies having extensive surgery, but if it is not picked in the early stages it will continue to result in loss of life!

Cost does not even come into this as Screening for Vulval Cancer would consist of a simple examination of the Vulva and can be carried in a few minutes by a Health Professional and this can only help raise the awareness of Vulval cancer and also help get rid of the stigma for this Cancer. Early Detection is the Best Protection... This cannot happen until it is enforced and we are ALL aware! 12 years ago to the day back in 2001 I found myself sat in the Consultation room at the Christie hospital with Alan, my sister, my Consultant and myself. He then said me those words every human dreads to hear.... You have cancer - a rare cancer- vulval cancer and that I would need extensive surgery to give me my best chance of survival. I only heard him say the word cancer and immediately looked round and saw Alan in floods of tears along with my sister. but I was numb no tears, not feeling no nothing! I could not stand the pain of seeing Alan cry or my Sister and the thought of telling Lisa and Carl was ripping me apart and breaking my heart. I closed my eyes thinking and really believing this was in fact a nightmare and I would soon wake up, but then the reality of the diagnosis hit me like an iron rod.

If all Health Professionals were aware of this rare cancer which they should be, this would not be happening, as most Vulval Cancers are in fact misdiagnosed due to the lack of knowledge by the Health Professionals and Ladies not being made aware.

Please, Please make yourself aware of the early signs and symptoms, Vulval Cancer if caught in the early stages has an excellent prognosis. All females need to know and everyone has females in their lives so please pass this poster and the VSE (Vulval Self Examination) leaflet on to them so they will be aware and will never find themselves in the same position I did and the 30,000 Ladies who are diagnosed with this every year world wide. If you would like me to print you a VSE off I will be happy to do so and post it to you so please inbox me your details. I am one of the lucky ones, sadly many do not it make it through this cancer which is due to the ignorance of so many Health Professionals as they continue to fail to give us the correct diagnosis in those vitally important early days.

Awareness, Really does Save Lives, so Please, Please Pass it on and start to help save lives. Please could I ask if you have a moment to spare to sign the petition which will be sent to the WHO (World Health Organisation) which I am hoping they will make it Standard Practice that ALL Ladies are Screened for Vulval Cancer when they go for their Smear/Pap and should be shown how to do a VSE and then come away with the knowledge this simple exam may well save their life!

“There has been a significant increase in rates of vulval cancer in younger women. The proportion of cases diagnosed under the age of 50 rose from just under 7% in the mid 1970s to 14% in 2006-2008. A similar trend has been documented in other countries, and has been linked to increasing incidence of vulval intraepithelial neoplasia (VIN) in young women caused by infection with HPV”.

The up to date statistics for 2010-2012 are not yet available.

Currently there is no screening for Ladies as such for vulval cancer and by doing a simple self check/exam such as this will help Ladies to pick up any changes on their vulva at an early stage, as well as other vulval conditions that may need treatment.

We feel until a vulva check/exam is in place as Standard Practice more lives will be sadly lost and the extensive surgery will continue to be carried out on Ladies, and the possibility of early diagnosis will continue to be missed.

It is also important that Ladies are made aware that vulval cancer when picked up in the early stages has an excellent prognosis.

Ladies are more likely to survive vulval cancer if it is found at an early stage. The only way this can be achieved is that all Ladies are made aware and educated about this disease and all Health Professionals are made aware of all the early signs and symptoms

We would like the World Health Organisation to make it Standard Practice for Ladies Worldwide to have a Vulva Examination when they have their first smear/pap test by their Health Professional and at that time be given an information leaflet explaining this cancer type, what signs and symptoms to look for and encourage them to see a GP/Health Professional should they see any changes on their vulva in the future.

We believe that when Ladies go for their first Smear/ Pap it should be Standard Practice they are offered a vulva check by their health professional and informed about vulval cancer and the early signs and symptoms to look out for, and in such a way not to scare them but to make them aware. This will by far educate millions of Ladies about this rare cancer, thus reducing the necessity for extensive surgery and more importantly the loss of life due to this diagnosis.

It is estimated that almost 27,000 women worldwide are diagnosed with vulval cancer each year. These are the statistics for 2007.

It also states the following at this link regarding the increase in vulval cancer in younger ladies:

“There has been a significant increase in rates of vulval cancer in younger women. The proportion of cases diagnosed under the age of 50 rose from just under 7% in the mid 1970s to 14% in 2006-2008. A similar trend has been documented in other countries, and has been linked to increasing incidence of vulval intraepithelial neoplasia (VIN) in young women caused by infection with HPV”

Currently there is no screening for Ladies as such for vulval cancer, However by doing a simple exam/check such as this will help Ladies to pick up vulval cancer at an early stage, as well as other vulval conditions that may need treatment which will save their lives.

It is also important that Ladies are made aware that vulval cancer when picked up in the early stages has an excellent prognosis.

Ladies all over the world are not made aware of nor are they being educated about Vulval Cancer! Albeit this is a rare cancer but recently evidence now states it is on the increase due to HPV. Please see the following information:

We believe that when Ladies go for their first smear/ pap they should be given a vulva examination by their Health Professional and informed about vulval cancer and the early signs and symptoms to look out for, and in such a way not to scare them but to make them aware.

They should be able to spot any signs that could indicate abnormal cells are developing and seek immediate medical attention.

If a precancerous condition is present such as VIN (Vulval Intraepithelial Neoplasia) and is treated, many cases of vulval cancer will be prevented, along with misdiagnosis!

This will by far educate millions of Ladies about this rare cancer, thus reducing the necessity for extensive surgery and more importantly reduce the loss of life due to this diagnosis.

“Early vulval cancer carries an excellent prognosis. Any suspicious lesion should lead to prompt referral to the local gynaecological cancer rapid access clinic, according to local/national guidelines”.

Education is the main stay of awareness with vulva cancer! We believe once Ladies are made aware, as they all were about Breast and Cervical Cancer, many years ago it would become a part of their monthly check as with their breast check. This would also help prevent the stigma of vulval cancer and instead help bring it out into the open as most cancers are.

We are constantly being told early detection of cancer greatly increases the chances for successful treatment. There main component of early detection of vulval cancer is Awareness andEducation. It is of the utmost importance to promote education and early diagnosis.

Recognising possible warning signs of cancer and taking prompt action leads to early diagnosis. Increased awareness of possible warning signs of cancer, among Doctors, nurses and other health care professionals as well as among the general public, can have a great impact on the disease and help raise the much needed awareness of this cancer and save lives.

Too many cases of this silent killer are going undetected and destroying the lives of many Ladies and their families all over the world, all of which could have been easily prevented by Awareness and education and early detection of this cancer, and less invasive surgery.

This subject is very close to my heart. 11 years ago I was unfortunately misdiagnosed with a cyst and not the correct diagnosis of vulval cancer and had to undergo extremely extensive surgery, a Radical Vulvectomy, which may well have been avoided and less invasive surgery carried out had this been picked up during the early stages.

During this time I was being misdiagnosed by Health Professionals due to them not being able to recognise the early symptoms, and as I had never been made aware I could do a simple check myself or one could have been carried out by a Health Professional.

Had I have known and understood the urgency it would have made me more adamant to push this issue forward with the Health Professionals I saw during this period which was approximately over a period 18 months to 2 years!

Thankfully after surgery I was given the all clear and have stayed clear of this disease. I count myself as being very lucky.

Unfortunately this is not always the case.

I ask that you consider this issue very carefully taking into account the following...

i) Prevention offers the most cost-effective long-term strategy for the control of vulval cancer and given it is one of the cancers which can be detected in the very early stages with an extremely high success rate, including the precancerous stage it is vital Ladies are educated about this disease.

ii) Early Diagnosis reduces the need for extensive surgery which also prevents Ladies from having ongoing problems for the rest of their lives

iii) Early diagnosis also reduces extensive body image change, thus preventing Ladies needing long term psychological care after the affects of having extensive surgery.

iv) Health Professionals also need to be more aware, educated and forthcoming with the rarer cancers in knowing what symptoms they should be looking for and that Ladies are referred to the appropriate Specialist as soon as possible where an accurate diagnosis can be made.

v) Ladies are more likely to survive vulval cancer if it is found at an early stage. The only way this can be achieved is that all Ladies are made aware and educated about this disease and all Health Professionals are made aware of all the early signs and symptoms.

vi) Fact: Most women do not know what Vulva cancer is till they are sadly diagnosed with it!

These changes can only be implemented by Educating Ladies and all Health Professionals and by raising awareness of this disease.

VACO has produced a leaflet with all the information needed for Ladies and for many years has been providing hospitals, gynae clinics, well women clinics, GU clinic and Cancer information Centres across the UK and also to the a few hospitals in the US and will continue to do so, alongside other extremely useful practical information for Ladies who have been through vulval cancer and the surgery, and an Information leaflet for Ladies who have to have a vulval biopsy.

The Vulval Cancer information on how to check yourself and the signs and symptoms leaflet can be found at the following link:

There are also booklets on practical help for post op care and for biopsy care available from the same web page.

Please support our campaign and sign our petition, your signature counts, every signature counts! Please take a couple of minutes to sign this petition and please pass the link on to all your friends and help us to make changes which will inevitable save lives, reduce extensive surgery and bring this cancer type in line with all the other gynaecological cancers and completely eradicate the stigma of this cancer and save lives!

If you have any issues you would like to discuss with me or you require further information please email me at vacouk@yahoo.com and I will get back to you!